Hello I’m Shantie. I got added yesterday and finally this morning I see the button which allows me to start a new discussion. I don’t have vWD. It’s my daughter who has type 1. She is 14 and not happy at all to have this condition. I write condition and not disease because once we dealt with her excessive monthly bleeds and iron deficiency she is doing really well. She had to grow up really fast and deal with issues very few 13 year olds have to deal with unless an illness is involved. That made us all very sad and scared! But what really breaks my heart is that she has this looming over her for the rest if her life. If course I’m thinking pregnancy, birthing, menopause and every other injury and or medical procedure that can pop up in any one’s life. The coagulation centre where we take her has a dentist service attached to the clinic and they give great guidance when it comes to oral health. It was sept2013 when she was hospitalised for a blood transfusion and since January2014 we have a definite diagnosis. I was tested but don’t have it. My son (8yrs) had bloods taken last week. We await those results. My husband will be tested also. I believe that a person can have vWD without his/her parents having it? Does anyone know if you have to be born with it? Or can a person develop vWD in later life? A quick bio about me: I am Dutch from Indian (Hindu) heritage. I grew in The Netherlands and English is my second language. I live in the Republic of Ireland with my Irish husband and two children. Thanks again for giving me a place to go to, to ask for your experiences and expertise.
Welcome to the group! So sorry your beautiful daughter has this challenge in her life. I hope that the info and support here will somehow make it easier to cope for both of you.
I'm so glad that you posted, I'm sure many will share their stories with you. I do not have VWD, I'm just a helping hand here at Ben's Friends, but I do suffer from a few rare diseases.
Well, the grand kids have arrived for a day or three, so here we go! It's off to the races!
Wishing you well,